Mortality, Dementia, and What It Means to Disappear
A New York Times Book Review Editors’ Choice
An essential book for those coping with Alzheimer’s and other cognitive disorders that “reframe[s] our understanding of dementia with sensitivity and accuracy . . . to grant better futures to our loved ones and ourselves” (The New York Times).
An estimated fifty million people in the world suffer from dementia. Diseases such as Alzheimer's erase parts of one's memory but are also often said to erase the self. People don't simply die from such diseases; they are imagined, in the clichés of our era, as vanishing in plain sight, fading away, or enduring a long goodbye. In On Vanishing, Lynn Casteel Harper, a Baptist minister and nursing home chaplain, investigates the myths and metaphors surrounding dementia and aging, addressing not only the indignities caused by the condition but also by the rhetoric surrounding it. Harper asks essential questions about the nature of our outsized fear of dementia, the stigma this fear may create, and what it might mean for us all to try to “vanish well.”
Weaving together personal stories with theology, history, philosophy, literature, and science, Harper confronts our elemental fears of disappearance and death, drawing on her own experiences with people with dementia both in the American healthcare system and within her own family. In the course of unpacking her own stories and encounters—of leading a prayer group on a dementia unit; of meeting individuals dismissed as “already gone” and finding them still possessed of complex, vital inner lives; of witnessing her grandfather’s final years with Alzheimer’s and discovering her own heightened genetic risk of succumbing to the disease—Harper engages in an exploration of dementia that is unlike anything written before on the subject.
A rich and startling work of nonfiction, On Vanishing reveals cognitive change as it truly is, an essential aspect of what it means to be mortal.
Baptist minister and essayist Harper, drawing upon her experience as a nursing home chaplain, devotes her affecting but uneven debut to reclaiming dementia patients from being defined primarily by their cognitive deficits. Arguing against seeing people with late-stage Alzheimer's and similar disorders as suffering a "death before death," she shows, instead, that a "palpable life force abides" in such individuals. Her wide-ranging work runs into some trouble, at times digressing into discussions of conditions she considers comparable, such as her own sleepwalking. More damagingly, she crosses the line separating a serious, medically informed look at dementia and a romanticization of it as an opportunity for "reorienting one's spirituality." For example, on apparent dementia sufferer Ralph Waldo Emerson's last years, she indulges in ethereal mysticism: "Seams widen, running outward to new and larger circles, to greater expanses of beauty and repose, and without end." In contrast, Harper touches too little upon experiences of anxiety, fear, bewilderment, and loss, such as that of a woman who tells her, "I don't know who I am anymore." Thus, while it's an admirable argument that dementia patients exist "along the continuum of human experience," this often moving book falls short of being persuasive.